Giant Cell Arteritis/Never ending

Bones, joints and muscles
1

I was diagnosed in October 2003 with Temporal Arteritis (Giant Cell Arteritis). I had a biopsy which was very suspicious but not conclusive however, I was immediately put on intravenous 80mg steroids, in hospital for 2 weeks. To this day I am still suffering badly with Temporal Arteritis. I have been on steroids now for 5 years and have been on a roller coaster ride with them all the time. I have been seeing my eye specialist every two months. My ESR is fine but my CRP is always elevated as soon as she tries to bring down the steroids.

Been through all the tests you can have MRI's the lot, also feel like a guinea pig at times.

As some of you know the side effects are terrible, I have put on 4 stone and my face is all puffy and round. It has totally changed my life and I get very depressed. I used to be a special needs teacher and had to retire due to ill health.

This disease is not to be taken lightly anyone with this disease make sure they are checking you thoroughly and don't stand for any messing about., I always insist on seeing the top specialist, it doesn't help that I only have one good eye and that's the one mostly affected.

I have now been prescribed by the Rheumatologist Azithoprine (cant have Methotrexate as my liver is damaged) which I should get next week. I am hoping this is going to work for me and I will be able to come down to a reasonable dosage of steroid, after five years I am still on 15-20mg cant go any lower as the pain is to intense.

The thing that gets to me the most is I was only 46 when diagnosed and all they have been saying to me over the years is \"your to young to have this\", well obviously not as I have suffered pain like you wouldn't believe, hospitalised three times and even Morphine doesn't touch it when it gets going.

Best wishes to all of you who are suffering from this chronic disease, I know exactly how you feel.

2

Hi

I am so sorry to hear the trouble you have had with your illness. I have had PMR for over a year and recently jaw pain and over the last week temple pain and really bad pain behind my eye. I went to the doctros who are sending me to a specialist because he suspects GCA. Please can you tell me about your early sysmtons. If it is that I have, then I fully sympathise with you regards to the pain. I thought I had a very high pain threshold but the pain in my eye is a grewler. I am on 20mg steroid and its not relieving it. The only time its not hurting is when I wake in the morning for about an hour. Hope you can find time to let me know your symptons. Chin up about the weight. My highest steriod intake was 30mg, I put two stone on and, yes it knocks your confidence for six. Makes you feel fat, ugly, unatractive etc but you have to keep telling yourself its not for ever!

3

Hi Breeze

Just wondered how you are getting on. Day after I wrote to you I ended up in hospital for a week having artery biospy, looking like I too have GCA. I have been put on 60mg steroids so maybe in a while I can be a roly poly. Just wondered how long before the dreaded moon face etc greets me, can you remember? :roll:

4

Chisnal-1944

I would have thought that if you had been on 20mg for over a year I would not expect any change in the side effects.

I have had GCA for over two years and had two relapses in that time and had to increase back to 60mg each time. Now currently on 10mg. I did not get the moon face, highs, lows, peach fuzz or gain anymore weight each time they were increased. Still have original weight gain, but even that dropped by half a stone when I got down to 7.5mg (lowest I have been).

So don't get too down hearted.

Breeze, ask for Tramadol, its an opiate base and sometimes it works where morphine does not - its worth a try.

There is a National Organisation called PMR-GCA UK, (so new it just got charity status last month) that runs self-help and support groups and they also have diagnostic procedures and quite a wide spectrum of information. Worth a shot.

Grumpy cat

5

I am 66 and had never been ill or had headaches or been in hospital.

I began the sweats and headaches in Oct 2004.

6 weeks in hospital seeing 3 consultants/specialists, 3 tests per day. they could find nothing wrong. I discharged myself on Christmas eve.

They said the only rhing they could do was throw steroids at it!

they put me on 24x 5mg steroids per day. I improved immediately.

in Jan 05 they did biopsy said I'd got GCA.

I was definately a test op for junior surgeons and am not at all sure the biopsy was genuine.

every time I drop below 5mg a day it all comes back.

even on 5mg I ache all over have headaches and mild sweats from back of head.

I was never warned of the side effects only that I could have gone blind in one eye and my bones would disintegrate.

side effects have been, heart pumping at only 40%, described as a perfect heart in first 12 months.

2 cataract operations.

doctors and specialists have dumped me.

With hindsight I would prefer to be blind in one eye and have a perfect heart.

THINK I WILL BE ON STEROIDS THE REST OF MY LIFE AND HEART TABLETS

I wish you good luck, god bless and merry christmas.

PS people who jump off bridges in Paris are

\"IN-SEINE.\"

6

I too think this is a never ending disease. Already into my 5th year on steroids. I try to live as normal a life as possible but it's always an uphill battle. For example today the tremors are really bad, the whooshing in my ear is I fear turning into tinnitus.

Surely there must be a reason for this CGA to be with me for so long. One starts to think \"is it something I have done or not done\"

The weight thing is awful, I dare not but any new clothes and squeeze into what I have.

I do hope for all suffers of this CGA that there is a magic cure very soon.

7

Dear all: It's depressing that the last posting visible here is from many months ago. Is there nothing new by way of comment or even better, serious treatment of this malady, with which I have been only recently afflicted (age 72 and 8 months)? That after no serious problems except for a few weeks and a life of more or less excellent health, careful diet and a good exercise program for decades. .

What I do not see in the various exchanges on this subject is any form of commentary about what in the past medical or life history of victims about the factors that may have contributed to its onset, or when. Perhaps there are enough common reasons amongst us to lead to a more effective examination. There are a number of academic and professional papers out there, but not a lot of it in lay persons' terms. One reads elsewhere of new ways of "repairing" damaged optic nerves, for example, but not in this context

I would be pleased to provide a brief version of my medical history - at least that which might be relevant, including a synopsis of current treatment, test results and on going attention if anyone considers that would be useful a useful contribution to their own experience or prospects for a form of recovery.

For now I seem to be getting the care and treatment considered internationally standard for this illness, although I am resident in Spain. What added to my stress however that of the four or five doctors consulted , only the ophthalmologist and neurologist appeared to have any knowledge of what was occurring. The others, general practitioners, appeared to know nothing about the disease until I mentioned the prospect (after a few hours of inexpert personal research on the internet) at which time they became very aware and wise, having obviously done the same rapid look at the subject! Until then, they all discounted the prospect of my having this disorder and claimed it would all be cleared up in a matter of months, perhaps mere weeks.

Regards,

Charles

Not "in Seine", but in Spain (sometimes the difference isn't so obvious these days).

8

Hi Charles! No I'm afraid there is little in the way of improvements in treatment of GCA - but there have been improvements in terms of diagnostics with an ultrasound technique having been shown to be better than a biopsy which is only positive in less than half of cases.

It is true that GPs are very unaware of GCA - but it is an uncommon disorder and most GPs have never come across a case in their life unless they happened to see one in medical school or while doing their rotation in rheumatology, eyes or neuro - and they may not have done all of those anyway. There is considerable activity in the UK to increase awareness because of the number of people going blind unnecessarily when it is not recognised in time. In fairness however - I have come across several people who have had visual symptoms including losing vision for several minutes and who have done nothing. I would be at A&E or my GP within a very short time - and would have been long before I learnt all I have about GCA.

Have you met the "PMR and GCA UK Northeast Support Group" website? And their forum. Both of which will provide you with info and entertainment from others with the same problems as you. And a few also spend a lot of time in Spain, some have lived there.

Eileen

9

Thanks Eileen: I will follow your advice and look at the support group you mention.

As for diagnosis, it's still not clear, after two CAT scans and one MRI what the immediate cause of my partial blindness is- either the GCA or a mini stroke. If it's the latter then there may be some hope of a degree of recovery- although the doctors I've consulted have mixed views on that as well. In the past few weeks I have noticed some deterioration, and my daily charge of corticosteroids was increased- that appears to have stopped matters from getting worse. Now I'm back on the reduction path hoping to get to a minimal maintenance dose in a month or so. A complication is that fact that I'm also taking a bata blocker and blood thinners, because of my slightly wonky heart. But I am back to a fairly active exercise regime- walking , swimming, etc. but no longer running in marathons anyway. A dozen of those was enough for me.

I'd be interested in hearing from any others with GCA who are in Spain- especially if they live near us on the Costa Blanca - Alicante province in particular.

Best regards, Charles

10

You haven't mentioned what steroid dose you are on - but one certain fact is that if you are aiming to reduce to a "minimal maintenance dose" in a month or so you are reducing FAR too fast - and that is acknowledged by all the experts to be the prime cause of flares whether you are talking about PMR or GCA.

I've quoted the Quick and Kirwan paper a few times:

Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis

published in the Journal of the Royal College of Physicians Edinburgh

and that gives a very sensible reduction scheme which they have found reduces the risk of flares greatly. Anything faster is very likely to simply result in symptoms returning - and since you have already got visual loss that is the last thing you need. They start at 60mg in GCA but even higher if there are visual symptoms and that also makes that initial reduction longer. In addition, we have had a few patients who can't even tolerate his relatively slow regimen - they have to stick to 5mg drops and some can only manage 2.5mg at a time once they are below about 40mg/day. But you know very quickly if you are that sensitive.

Not quite sure why being on betablockers and warfarin (or whatever they use in Spain) is a complication. So am I and so are many of the people I know through the forums - who by definition have either PMR or GCA. Other than the usual problems with beta blockers noone has any pred-related problems in that sense and personally I have no problems at all despite my suitcase of drug packages including sintrom (anticoagulant), a betablocker and an angiotensin II receptor antagonist and an antiarrythmic. If you have problems with your heart medication then they need to consider the alternatives - I am on what I am because I was allergic to the first choice. But what I'm on has no deleterious effect on anything that I'm aware of!

But truly - slow down! It isn't a race to get to a low dose, you must go at the rate your body and the disease process dictates. If you go too fast you will simply end up having to go back up to a high dose - and what is even worse yoyo-ing the dose makes the next attempt at reduction even harder. Not just our opinion - the experts have realised that too.

Eileen

11

Thanks again- the neurologist actually plans to take me down (now that I look at the notes we took in his office) in controlled stages, over about two months, not one- and I would probably not drop down to the sustaining level for six months or so depending on how things go. Meanwhile 've one down from 120 mg per day to 45, and my blood sedimentation rate is ( or was last week) back to the normal range. Another test next week, to see if about two weeks later, I can drop to 30mg per day, and so on.

I'll copy the above to my GP and the neurologist .

Some good news though- for whatever reason ( a friend said she was going to offer a novena of prayers for me - ending today- even though I'm not a believer) today, my field of vision in my now "bad" eye is somewhat better- the curtain effect is there, but it's now more like a barrier across the eye, so I can see movement at the top of the affected eye, and I'm picking up some light on the worst part which has not been possible since I had the attack.

Also thanks for your note re bata blockers, etc. one concern I have is that the doctors we see here aren't in direct contact- there are some language issues and they don't entirely agree on treatment- I believe we have that in hand. Until this came along, my only pills have been vitamins, so there is a paradigm shift of sorts there too.

Charles

12

Tell me about it Charles - until the PMR was identified I didn't even indulge in vitamins! I was fairly happy on just pred with no real problems until last year - and that has been like jumping off a cliff! And one's doctors disagreeing about the treatment is par for the course whether there is a language issue or not ;-)

Eileen

13

Hi folks,I'm new to computers as well as GCA but would be grateful for your knowledge as I feel out on a limb.

Nearly 4 weeks ago I went to the docs with a severe pain above my ear.Doc told me it was a muscle in my neck & gave me co-codamol. 2 days later I returned to docs,saw another doc who prescribed Naproxen,the following day a doc rang me to say she'd got my blood results and she wasn't happy would I have some more bloods done ( I seen her a week or so before with back pain) I explained that I'd seen another doc & told her about the head pain & stiff neck. 2days later back to docs again to be told the I had inflamed arteries on my temple lobe.Doc put me on steroids 6 tablets daily,the following day the pain was absolutely horrendous,I went to the hospital,had blood tests & was told it was Temporal Arteritis.Doc was surprised that I was only told to take 6 tablets & doubled it,he told me to take Aspirin for the pain.He said I had to go to my surgery 2days later for more blood tests.Went to docs & was told there was no point in having bloods as they were done 2days before.He then noticed that the doc at the hospital had given my aspirin & told me not to take it but to take paracetamol instead? Do I take Aspirin or not? From what I've read this is a serious condition & I feel as though I've just been left.

Many thanks,

Chris.

14

Hello Chris and welcome to both computers and the GCA 'club' although I know you'd prefer not to have had the need to join the latter! However, it was so wise of you to go straight to hospital when the pain worsened where it's good to hearth they were able to swiftly diagnose you and get you onto the right dose not only to ease your symptoms but importantly to protect your eyesight which would have been at risk from the uncontrolled inflammation. I assume that your original steroid starting dose was 30mg which has been increased by the hospital to 60mg?

The hospital were right to refer you back to your surgery for ongoing monitoring. I can understand your Dr feeling that after just 2 days on the increased dose it was too soon to repeat the blood tests (ESR and CRP), but as the steroids can often reduce the symptoms within a couple of days or even within hours, then it is possible that the repeat test would have shown reducing inflammation. You should definitely have these tests repeated after a week and, ideally, your Dr should refer you to a rheumatologist. Meanwhile, don't be in any hurry to reduce from that starting dose for at least 4 weeks and then only if your symptoms and blood tests have improved.

Some Drs do start patients with GCA on low dose aspirin provided the patient isn't vulnerable, mainly as a protection from possible side effects of GCA, although I wasn't prescribed them. Others sometimes take paracetamol, but I preferred to just rely on the high dose steroids to do their job and I was lucky in that my 40mg starting dose resolved all my GCA symptoms within a couple of hours (I also had PMR but that pain took longer to resolve).

If you Google and download the British Society of Rheumatologists' Guidelines for the Management of GCA, you will be able to read much more information. Also, if you are in the UK, Arthritis Research have a helpful booklet on GCA available free of charge on 0300 790 0400. Depending on which part of the country you live, there may be a support group nearby where you can meet up with others going through a similar experience.

I hope you feel better soon but don't hesitate to ask away if you have any further question and there will always be someone around to help from their experience.

15

Hi Christine and welcome! Sorry to hear you almost certainly have GCA but the big positive is you had doctors who took it seriously and did something.

It would help us if you told us what you mean by "6 tablets a day" - I assume you mean 6 tablets of 5mg each, a total dose of 30mg a day. Doubling it to 60mg would be quite normal for GCA, it needs a very high dose to avoid it affecting your sight and sometimes they give even more, even up to 100mg but then they usually give it by a drip into a vein.

As for telling you to take aspirin "for the pain" - I'm horrified at that but I suspect he has got some facts mixed up. You should NOT take any of the pain-killers called NSAIDs when you are taking prednisolone: both of them can cause stomach irritation and lead to bleeding, take both and the risk is increased greatly. If you need pain relief - yes, take paracetamol but still only the recommended dose and preferably never with alcohol, each of them are bad for your liver. That said - it is the dose pf pred which will stop the pain as it reduces the inflammation. The inflammation causes swelling which makes it more difficult for the blood to flow through the artery so tissues don't get enough oxygen - think of a hosepipe that is being stood on, the water can't get through to water the plants.

It is recommended that patients who have GCA should take a low dose aspirin per day - just like they tell you to if you have had or at risk of a stroke or heart attack - and it is to make your blood less "sticky". I'd like to think he mixed up that with using aspirin as a pain killer. I also hope you GP knows about taking a low dose aspirin with GCA.

I hope you are taking the pred tablets all together in one go, first thing in the morning, as early as possible. Never take it on an empty stomach, in the middle of your breakfast is ideal but quite a few of us find a good live yoghurt is also enough - you can leave that by the side of your bed with a glass of water, take it as soon as you wake up with the yog and that allows it to get into your system before the day starts. If you happen to wake up very early - so much the better, and having the yog and water by the bed means you can get on with it without having to get up and then cuddle down for a bit more kip! You need to take the tablets all at one go to get the blood level high enough to really attack the inflammation.

I think the reason the hospital doc told you to get your bloods done again was to see if it had risen any further - "it" being a test called the ESR or another is called "CRP". The ESR measures how fast the red blood cells sink to the bottom when blood is put in a tube and it is set up on end - like the snow settles in those globe things with a scene and water in them. It depends on the proteins in the blood - they change when there is inflammation in the body and the red blood cells sink to the bottom much more quickly. CRP is a direct measure of some of the proteins - it also goes up in most cases of GCA and can reach VERY high levels. If it does it can be used to see if the treatment is working - it doesn't in a few people and then all there is to go by is the improvement in the symptoms, but they are the most important guide anyway.

I think that's enough info for now - but come back and ask any questions you have and we'll try to answer them. MrsO will be around later too, she has had GCA though it took then a very long time to realise it. You say you feel as if you have been left - most GPs have never seen a case of GCA, it is a quite rare illness, and they also tend not to realise a) how scary it can be and b) that you DON'T immediately feel back to normal when they give you pred. Apart from anything else the high doses of pred can make you feel quite bizarre - but it will save your sight!

If you follow this link:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

you will find links to some other sites where you will find a lot more info than is obvious here. The PMR and GCA U northeast support site in particular has articles and stories from doctors and patients which are all checked for accuracy - no internet wibble there! The other forum also has loads of people (some fro here too) who have already been there, done that and got the t-shirt.

Where do you live? There are support groups with real life people in various places all over the UK and there may be one near you if you live in the UK.

all the best for now

Eileen

16

See - told you MrsO would be around! We were posting at the same time. The link I gave you (just click on it and it will take you to the other pinned post) gives you a link to the support site which has the Guidelines MrsO mentioned on it. When you get to the home page there is a list of things on the lefthand side - go and explore!

Eileen

17

Glad I didn't let you down Eileen!

18

My dad was diagnosed with temporal arteritis over 5yrs ago and after somewhat being mistreated by a variety of inexperienced gps. What some fail to recognise is temporal arteritis is classed as a medical emergency that requires treating as such.

Eventually my dad saw a fantastic neurologist cos we paid to get him seen due to lack of action from the said gps.

The neurologist reassured dad that it is not always accurate to diagnose from biopsies but he was 100% certain from esr results and symptoms, plus the fact that one dose starting at 80mg prednisolone "switched off" the symptoms.

Over the years dad has tried to reduce his steroid dosage and has bravely weathered all the side effects accordingly.

Now he is being converted to methotrexate with the initial plan of weaning off steroid therapy but sadly it seems as tho he will need the combination of both.

His main probs now are nausea from the methotrexate which last for two days after the day he takes that plus repeated episodes of oral-oesophageal thrush so any advice is welcome.

By the way he was 80 last week and if not for this brilliant neurologist he would either have been blind or worse!

And ps. His weight came down with his dosage...as we said rather have a plump dad than no dad! :-)

19

Hi Angela! As far as the thrush is concerned could your dad eat a live yoghourt a day? This has been a recurring problem of mine, but I do know that the yoghourt keeps mine under control.

His GP should be able to give him something to take for the nausea - I was lucky and only got mild nausea in the early days. It 'wore off' as the dose was increased but I know many find it a huge problem.

The neurologist he saw was on the ball - biopsies are fine if there is a positive result but unfortunately a negative doesn't always mean you haven't got it. The specimen may be too small or simply to have missed catching some of the giant cells. They are finding now that ultrasound is more useful as a diagnostic tool.

Methotrexate is usually used as a steroid-sparing agent in PMR and GCA in that it may help to minimise the symptoms, so allowing steroid reductions. There have been very favourable reports on a drug called tocilizumab recently, so we are hoping that eventually we will find an alternative to prednisolone.

Please wish him a belated happy birthday from me - he must be a lovely dad to have such a caring daughter,

20

Thankyou nefret,

He has some antiemetics that he has on his methotrexate days but it still 'knocks' him off for a day or two so hes used to that by now alas.

As to the thrush hes not one for yoghurt but can eat haha, usually ice cream and he never had a sweet tooth before!

I think hes pretty good considering how ill he was, particularly at the beginning.

I would press anyone to check that their neurologist is specialised in gca and pmr to get the best treatment.

Certainly my dad is better for having confidence in the physician and trusts his judgements.